Freedom of medical research and treatment around the globe

Freedom of medical research and treatment around the globe

Expanding medical knowledge through research, enhancing patients’ well-being through medical treatment, and securing the best available treatment are universal aspirations shared by researchers, health care professionals and patients around the globe. Their freedom to translate these aspirations in actual results is contained by the regulatory environments in which researchers, health care professionals and patients live. Regulatory environments differ from nation to nation: some support freedom of researchers, health care professionals and patients; some limit it. Aiming to raise awareness of such differences and to foster an evidence-based dialogue between policymakers, patients, the medical community and society, this project monitors the degree of freedom that researchers, health care professionals and patients enjoy in each jurisdiction around the globe. Researching and measuring “freedom” is an important task as it allows understanding the context in which science and medicine advance.

Defining “freedom”

Freedom is a powerful yet controversial concept from. In fact, there is no uncontested definition of “freedom.” The study is concerned with a descriptive notion of freedom, one that can be measured. In an effort to avoid theoretical traps—to the extent that is possible when dealing with controversial ideas— and to operate with a definition of freedom that can be operationalized and eventually measured, this study adopts Gerald MacCallum’s definition of freedom as a triadic relation. Ian Carter summarizes this view as follows: “Freedom is … a triadic relation—that is, a relation between three things: an agent, certain preventing conditions, and certain doings or becomings of the agent”.

In other words, freedom is determined by the conditions that constrain the action of (moral) agents. Absence of freedom is true only in limited circumstances, for instance with the conditions imposed on action are so limiting that no action is possible. Any agent who is not absolutely prohibited from choosing and pursuing a certain course of action is “free,” at least to some extent. Since radical restrictions are often not the norm, MacCallum’s view is that freedom is in the majority cases a matter of degree.

This study applies this definition of freedom to health research and treatment in these terms:

biomedical researchers, health professionals and patients are the agents;

Monitoring and measuring freedom

Thinking about freedom as a matter of degree facilitates measurement. Actions are thus “free” on a scale from absolute prohibition to complete absence of constraints. Since law and other regulatory instruments constitute key sources of constraints in modern societies, we can monitor and measure freedom by reviewing the regulatory environment in which researchers, health care professionals and patients do research, provide health care, and seek treatment. This review allows us determine the degree to which we can say that actors are “free” to pursue the aspirations to expanding medical knowledge, foster patients’ well being and choose the best treatment.

Methodology

Thinking about freedom as a matter of degree facilitates measurement. Actions are thus “free” on a scale from absolute prohibition to complete absence of constraints. Since law and other regulatory instruments constitute key sources of constraints in modern societies, we can monitor and measure freedom by reviewing the regulatory environment in which researchers, health care professionals and patients do research, provide health care, and seek treatment. This review allows us determine the degree to which we can say that actors are “free” to pursue the aspirations to expanding medical knowledge, foster patients’ well being and choose the best treatment.

Identification key areas of medical research and treatment that raise important questions of freedom

Four areas that raise important questions of freedom, and thus can lead to key insights as to the degree of freedom that researchers, health care professionals and patients enjoy, were selected. These four areas are:

Assisted reproduction technologies (ART);

Research with human embryonic stem cells (hESC);

End-of-life decisions; and

Abortion and contraception.

We plan to expand the project further by monitoring freedom of treatment in two policy areas: therapeutic use of narcotics and pain treatment.

Operationalization of the meaning of “freedom” in each of these key areas

To operationalize ‘freedom’ in each of the four areas of medical research and treatment, key regulatory conditions that constrain actors to some degree were identified. Furthermore, a list of questions was prepared for each of the areas. These questions capture the nature of these conditions and the degree to which the regulatory framework limits actors’ freedom to pursue the proper goal of each area of inquiry

Measurement

Points were assigned for each answer of each question.

Points (from 0 to 12) are assigned for each answer of each question. The highest score is allotted to the regulation that recognizes the highest degree of freedom. Progressively lower scores are assigned to less free environments, that is, regulatory environments that limit freedom moderately, severely, or entirely. The score 0 was assigned to blank prohibitions. If data are not available, the answer is not included in the calculation. For each country, we report the level of completion of data collection.

Data collection

To assign the points, each question needed to be answered. To this end, data were collected from various sources including primary sources (statutes and other regulatory documents) and secondary sources (scientific papers and policy reports). As of March 2014, we have completed data collection for 42 countries.

Ranking

Points were then added to a total. The result quantifies the degree of freedom that key actors enjoy while acting in each of the areas of medical research and treatment selected. The points of each area were then added and their total represents the score of each country. Countries were then ranked based on the overall score.

Research and Self Determination Index

The Research and Self-Determination Index measures the degree of freedom to investigate human biology and to exercise self-determination with regard to our bodies.
Expanding medical knowledge through research, enhancing patients’ well-being through medical treatment, and securing the best available treatment are universal aspirations shared by researchers, health care professionals and patients around the globe.Go to Research and Self Determination Index issue page

Abortion

Abortion and contraception allow women to express their freedom of reproduction by exercising their right of self-determination over their bodies.Go to Abortion issue page

Assisted reproduction

Access to assisted reproduction concerns our ability to expand our freedom of reproduction by offering us the opportunity to have children notwithstanding infertility.Go to Assisted reproduction issue page

End of Life

End of life decisions concern our ability to make choices concerning the end of our lives and take of the form of refusal of life sustaining treatment, being help in committing suicide, choosing euthanasia, and make choices that must be upheld even when the person becomes unconscious.Go to End of Life issue page

GM Crops

GM crops have contributed significantly to modern agriculture. Plant breeding using genetic modification techniques has led to improving crops in more targeted ways than classical breeding techniques.Go to GM Crops issue page

Research with embryo

Research with embryos and pre-embryos as well as therapeutic cloning concerns scientists’ freedom to investigate human biology as well as patients’ freedom to access regenerative medicine treatments that may be developed as a result of research with human embryonic stem cells.Go to Research with embryo issue page

Right to science

The human right to science is recognized in Article 27 of the Universal Declaration of Human Rights and Article 15(b) of the International Covenant on Economic, Social and Cultural Rights.Go to Right to science issue page